I'm really not enjoying this...

Its 4:30am on the morning of Friday 23rd. My sleep pattern is completely off now. I'm falling asleep between 5 and 6 in the morning, and waking up around 2 in the afternoon. I then sometimes need an extra couple of hours of nap around 5pm and/or 9pm.

I've watched my way through 5 and a half series of the West Wing in the past 2 weeks (22 episodes @ 45 mins each per series). Most of that is at night.

I'm doing pretty much no exercise, almost nothing social, and still feel just a little bit numb after the weekend's excitement. I keep looking at my phone willing Kings College Hospital to ring, but of course they haven't yet.

Well, I tell a lie - they did ring on Monday to see how I was feeling, which was nice. The transplant coordinator on the Sunday morning had been concerned about my emotional state for the period following the disappointment, and it was nice to receive follow-up.

Apparently it was quite unusual to ask me to drive in to hospital that night, but they were really busy with other things and it helped them out. They were impressed at how fast and numerous my friends and family were to respond, which makes me feel very lucky.

So I remain top of the list effectively, in as much as there isn't anyone above me with my size of liver. How long I have to wait for the call now is anyone's guess. The old mantra (it could be tonight, it could be some weeks) has been repeated.

I just can't describe my state of mind at the moment. Positive - in as much as something finally happened at the weekend. Negative - as I'm feeling like a totally lifeless lump with nowhere to go, nothing to do, and nothing to contribute to the world while I'm waiting. I'm excited and scared, tired and frustrated. Listless.

My poor skin looks a mess. I'm scratching it so much I have small scabs all over the place where I've bled. They get scratched off and they grow and get a bit worse, and it goes on. (Sorry I know that's disgusting).

I have a small blister on my hand where I was rubbing and scratching, and it's bright yellow as the liquid filling it is, like everything else in my body, full of bilirubin.

I just must have scratched something right near a vein earlier tonight as I absolutely gushed blood for 10 minutes out of this tiny, tiny scratch. It scared the hell out of me, but luckily eventually stopped. (I don't clot quite so well at the moment - another symptom).

It's cathartic writing it. I refuse to become a negative drag on everyone else, so I don't really say it anywhere but here. I'm thinking it, but I'm also thinking, endlessly, of all the wonderful things I'm going to do when I'm well.

This may well be another of those big life battles, but damn it all, I'm going to win, and when this bastard thing is out of the way - well, watch out world!